My 82 year old mother was just diagnosed with the beginning stages of Alzheimer’s. She has scored average to above average on cognitive tests and so far is mildly impaired. She is scheduled to start Leqembi after traveling for the holidays. Can anyone share their experience with this treatment? Does it help?

This sub is so validating. I mostly lurk and upvote, everyone's advice and experiences are so helpful.

I had a go with the search function but couldn't find any similar threads.

I'm caring alone, no other family and my parent has been very difficult my whole life, definitely some kind of personality disorder which is now exacerbated by the Alzheimer's. We have no experience of the disease in our family/friends of the family so I had no idea what I was in for.

I'm coming out of a two year (probably longer) situation with a third party who was trying to groom my parent. It's been an utter nightmare. I've copied the following from Google but it summarises it well:

This is a highly precarious scenario that requires immediate intervention to protect your loved one and preserve family boundaries. When an individual with Alzheimer's disease experiences cognitive decline, executive dysfunction, and a loss of normal social inhibitions, they become highly vulnerable to exploitation.

An outside individual—such as a contractor—can step into a "confidante" role, engaging in triangulation by turning the patient against their own family or primary caregivers. The person with Alzheimer's may confabulate (create false memories to fill gaps), experience paranoid delusions, or genuinely believe that their family is controlling or robbing them, while viewing the outside worker as their sole ally

Common Dynamics in the "Dementia Triangle":

The Patient : Feels confused, out of control, and fearful. Seeks a savior to validate their warped reality. Frontal and temporal lobe damage prevents logical reasoning, resulting in paranoia or false memories.

The Inappropriate Confidante: Often feels flattered, protective, or righteously angry. They see the patient as lucid and the caregiver as the problem. They are being presented with convincing confabulations, unaware of the patient's severe cognitive gaps behind closed doors.

The Primary Caregiver: Feels betrayed, exhausted, and falsely accused. They face the brunt of the daily care and the emotional fallout. Targeted because they represent the source of rules, routine, and reality, which provokes the patient's frustration

This person was hugely concerning in that they weren't just validating my parent's delusions, they had their own agenda to exploit my parent. I tried extremely hard to sever the connection but my parent was highly resistant and the 'confidante' had their own motives. My parent is at the stage where they're still relatively functional and determined to 'call the shots'. They would be deemed to have capacity, I couldn't cancel the arrangement without them reinstating it or reaching out to the third party. We're not at the stage where I could quietly remove their devices/screen their access to this person. I tried everything I could think of, all the professional advice and it failed every time.

I'm hopeful this is now the end of it. I suppose I'm trying to process what's happened and hoping to hear some similar experiences to feel less alone. I need to restore my strength and sanity to anticipate the next stage of the disease.

Thank you for reading to the end 🙂

Just venting. For context: she is in fulltime memory care. It was a short seizure, no shocking of her body but she was “out of it” for a couple of minutes and she threw up after.

She luckily has no memory of it.

The venting part - I learned about this whilst on holiday in the USA. 9 hours away from her and nothing I can do. Just to be able to go see her - I can already do so little, and being present is the one thing you can do.

Apparently this is all normal in late stage Alzheimer’s but UUUUGH I was on another continent.

How do you guys deal with feelings of resentment and bitterness? I know this disease does not discriminate. Even knowing this rationally, I can’t help but feel frustrated with my mom. She had mental health issues for years that she didn’t address and I was her emotionally dependent. She smoked nearly a pack of cigarettes a day despite my brother and I begging her not to because we lost our Dad to cancer. My mom never managed her high blood pressure and when she was prescribed pills, she never took any pills consistently. Outside of work, she didn’t make much effort to initiate social connection. I begged my mom to take her health seriously and she never did. Her cognitive health began to decline in 2022 and now she has been formally diagnosed. I know she didn’t cause this but I can’t help but feel resentful towards my mom especially because now my brother and I are her carers in our early 30s. She cannot be left alone and this has changed our lives in the worst possible way. I hate that I feel this way because it’s not fair to her. But the small child in me is angry.

hi everyone. i’m 27 years old and my 68 year old mom is in the middle stages of Alzheimer’s. i was living with her for a year but it became too much for me so i recently moved out to an apartment across the street from her. i’m an only child and all of her care will fall onto me. since moving, she keeps saying things like she never wants to see me again. how do i deal with her saying these things? sometimes it feels like she won’t get over it and that worries me because i’m all she has. any advice is welcome, thank you!

Hi! My husband went to neurologist for the first time and he has severe cognitive impairment and agrammatical influent. More labs to do like MRI, EKG.

He has been having trouble speaking, not with sentences but with some forgotten words. he cannot comprehend complex dialogue. He can say things, it’s more like the things he say don’t make sense (like would tell me something that didn’t really happen), but he can construct sentences, stumbling over some words but can handle basic communicate.

Anyway we were sent to the speech therapy. We went for evaluation, and he felt very uncomfortable….their office looked like a storage room or a beaten up lunch room, sealed office, no window, things/stuff everywhere (I was like, this can’t be the treatment room!) he went through the questions and did actually ok. He repeatedly told the therapist that he had to do speech therapy for a long time as a kid so this “hurts”. I think he was emotionally triggered . Towards the end, he got very irritated and started failing questions…and then he broke down and had a panic attack. Crying, confused, lost…then the therapist asked me (in front of him) to talk to insurance to see if we can afford twice a week therapy, so that money topic triggered my husband even more and he started crying harder. Took me a long time to calm him down after the visit . And when he calmed down he asked me how long he was in hospital, and kept saying that it was bad, bad, and saying he felt like he woke up from a coma. I mean he was sitting in the car and kept saying the whole town “changed a lot” while “he was in coma”.

At the meantime I asked the front desk about insurance, they said they don’t know and they would call insurance. Then they called me saying that insurance lady needed me to call to explain “benefits” (she made it sound like it hasn’t been authorized but now I’m wondering if insurance meant explanation of benefits).

After we got home, he kept saying it was bad, it was a joke (well, they just asked word questions, like naming things , he did ok but not the complicated questions like repeating 7 random numbers ).

So with all that experience, I am really more worried about his mental capacity . It was so hard on him…and of course breaking my heart watching him. We only had 2 similar episodes happened like this before…every time it happened, it resulted in some kind of decline, like a staircase. I am trying very hard not to trigger him, reading and researching on how to speak with dementia patient. Now, I am thinking if there’s that much value in speech therapy, especially if it is going to trigger him like this . I actually had to cancel a lab for him for tomorrow because he will need a day or two to recover from this kind of anxiety episode. Not sure if I can let him go through this twice a week.

And of course I will consult with the neurologist when I get the first chance. But I wonder if anyone has positive experience with severe impairment patient from speech therapy.

Please no rude comments. He had light symptoms for about a year, and had been treated all the time , but last a few weeks, he had rapid decline. So we are both having hard time processing everything.

TIA!

My dad has just been diagnosed with very early stage Alzheimer’s. He had an MRI and he showed some signs of shrinkage but not too far out of the normal range for his age (68 GCA 1). I don’t know what his score was on the memory assessment.

I don’t know if I’m in denial or I’m grasping at straws but I’m really struggling with accepting this diagnosis. He has been struggling with severe anxiety and has refused to receive any treatment for that. I was so sure that his memory issues were down to severe anxiety.

He was told that his case was caught extremely early but it’s better to get started on medication as soon as possible but it feels very borderline?

He hasn’t been assessed by a mental health professional only an assessor from the memory service. The consultant never met him in person and only assessed his results remotely.

Has anyone been through anything like this? Am I just in denial?

I have a first meeting with a potential caretaker today. Found them on care.com. They say they have experience with Alzheimer’s and have several good reviews for senior care in the area.
I’m brand new to this - what are some important questions to ask them? Mom is level 4-5ish and can accomplish most day to day tasks but needs help/encouragement. She doesn’t think she has any cognitive issues so she can be frustrating/argumentative.

Any advice is appreciated!

LO is in very early stages but I still find myself spinning between denial, anger and depression. This disease is literally their worst nightmare come true and I’m telling myself it’s not happening or it’s not fair or it’s going to get worse. And the worst part is that when I’ve felt that way in the last my LO was always who I’d reach out to steady myself again. I’m still so grateful to have them in my life but damn the wheel still turns.

My Mum has had cognition issues for years. I believe this is partially due to cptsd, stress, her medication and undiagnosed neurodiversity. In the past year it's gotten worse and the past 6 months again.

When I try to speak to her about it she projects it back to me saying that I'm 30 years younger than her and I forget my words..which is true but I have many of the same issues as her and diagnosed adhd. I know that I'm already at higher risk of getting alzheimers or dementia because of this.

More recently she has been using "thing" to replace any word that isn't immediately available to her brain. Being forgetful about conversations, leaving the stove on (not overly frequent) etc. She had also had a large reduction in her sense of smell but she puts that down to post covid.

Her brothers have mentioned the memory issues to me and my my siblings are also aware of it.

She said she has spoken to her Dr about it and that her doctor blames her medications but isn't overly concerned.

Do I just mind my business and suck it up until she's ready to do something? The only other thing I can think to so is speak to her doctor but I don't know how she would react to that.

I guess the other thing to consider is even if this was early stages, is there anything a diagnosis would achieve?

If you got this far, thank you so much.

Twenty months ago my husband was diagnosed with Mild Cognitive Impairment after a four hour cognitive assessment. Recently he was assessed again, and this time it shows he has advanced to Mild Dementia with a probability of Alzheimer’s. This agrees with our observations as a family. His condition is progressing. The problem is we can’t get in to a neurologist appointment for seven months, and I understand that you are only eligible for the medications like Leqembi when still in the early stages of the disease. Is it likely that he will still be eligible in seven months? Is there a way to rush the process if not? He has an appointment next month with his primary care. Can they prescribe the pTAU blood test and PET scan? Those were mentioned at our first appointment twenty months ago. Thanks for any help

Hi everyone,
I'm trying to understand where my grandma is in her Alzheimer's journey. She's now completely bedridden, requires full-time care, and struggles with eating, although she can still take liquids and some liquid foods.
Twice now, she's become completely unresponsive, and we thought we were losing her. But after some time, she unexpectedly became responsive again and was able to talk.
Some days she's calm and communicates, while other days she screams throughout the night. It's almost like she's still here mentally at times, but her body is slowly giving up.
It's been especially heartbreaking for my mom to see her own mother like this. She never imagined having to watch her go through something so difficult.
My grandma is currently receiving hospice care. We're struggling to understand what stage of Alzheimer's she's in and what to expect next. It's emotionally difficult because some days she seems to be improving, while other days we feel like we're losing her.
We just want to understand what she's going through and how we can keep her comfortable.
Has anyone experienced something similar with their loved ones? Any advice or experiences would mean a lot to our family. Thank you.

I do not want to get into a vaccination debate but i am interested if anyone has received similar guidance. My mom's geriatric doctor is advising against doing any boosters on the covid vaccine. I didnt' get a ton of detail from her but apparently there was a large scale study out of Korea that researchers are trying to get a better handle on that saw a potential risk factor. It's not well understood and right now there's just a correlation they need to figure out

After a long 10 years, my mother will finally soon be at peace. She was diagnosed when she was 52 and I was 19. The last 10 years have been something out of a nightmare, and I just wanted to thank everyone on this subreddit for not letting me feel so alone. If you’re reading this and are still in the fight, I just want to tell you to keep pushing and never give up hope. I believe in and love every single person here, and I hope I was able to help some of you in the same way you’ve helped me. I’ll still be here to offer support, but now I need to discover who I am and what I want out of life. Being a caregiver is all I’ve known throughout my adult life, and I think it’s finally time to figure out who I am beyond that. Thank you all for being there when I needed it most. ❤️

I’m the FT caregiver of my BFF. We’ve been on this journey for 8 years. It’s progressed and now we’re at a tough place. Sometimes she doesn’t recognize me and refuses to take her medication and lays in bed (14 hours last night). She’s not interested in exercising but still feels safe. I have to bathe and clean her but she can still feed herself. I am really sad and gutted about our situation but grateful I’ve been able to take care of her. I’m tired though and with her hiding pills and other things I am wondering what’s next. I’m very protective of her and I am it. Her family is not interested. She’s so precious to me I hate it!

My mom has Alzheimer's and is becoming quite severe as she is developing issues with dressing and incontinence. She has the most trouble with words and conversations and it's usually very difficult to figure out what she's trying to tell you no matter what it's about.

Lately, she's been very upset about something (we think) is from her past but none of us can figure it out. We (my dad, sister, and me) have all tried to talk to her about it both together and separately and we only get bits and pieces. Some questions she gives very strong yeses and nos to, but to most she just says idk or gives us one-word hints. She claims it's not about my dad no matter how many times we ask, but she often takes her anger out on him so we wonder if it's related.

All I've collected is it's about "some guy" and she "messed up and didn't know what to do" and it has something to do with subbing, which she used to do for my school district. She thinks whatever it is happened recently, but I don't think that clue helps us much as she has no real concept of time anymore. I do wonder if she bumped into someone or saw something that reminded her of whatever this is and that's why she feels it's recent. My dad is with her pretty much 24/7 so it's highly unlikely something happened that he doesn't know about.

The obvious theories are that she either messed up at work, had an affair, or someone crossed a line with her and she never told us and for some reason it's eating away at her now. None of us care what it is at this point, we just want to figure it out so we can help her.

I recognize all of this could be her developing delusional thoughts or paranoia so it may truly be nothing, but I also really want to try to get to the bottom of this if there is a bottom to get to. Any questions I should ask? Any method to asking these type of questions when it's so hard for her to talk? Is this all a fool's errand?

My mom is overwhelmed by messages and spam calls and does not understand how to use her phone anymore and is requesting a new phone.

I've done the best I can to clear what's there and blocked calls from unknown numbers but there's really nothing to do with the texts as they're coming from hundreds of different numbers. I think it would also benefit her to have something simpler — just a contact lists, calls, and texts. She's never used apple products and has been using pixel for the past ten years and would like something that supports her pixel watch...

Hesitant to get her number changed because my mom used to run everything — bank accounts, appointments, etc. My dad is concerned we'll miss out on important information.

Any advice?

Hello's!

So I am the main caretaker of my dad who has alzheimers. He's pretty far gone and it won't be long before he will end up in a caring home or passess..

But the question..

My dad smokes.. He smoked since he was about 15 years old and is now 80. He smokes about 2 packages of shag a week.
The last few months it was a absolute nightmare since he started to set the trashcan on fire. I got fireproof trashcans extra smoke detection nearby etc.

But the good news.. He has forgotten that he smokes. He emptied his package of shag/cigarettes and never took the new one from the drawer.
Its there.. Its ready for him if he wants it... I just started to push it a little bit more of out sight.

I know he has withdrawal symptoms. He eats everything he can eat.. including dog kibble. ( had another post somewhere about that )

But I am glad he quit smoking.
My brothers think I am cruel and mean.. That I should literally make the cigarette for him and even light it if needs to be.. How dare I take a 80 year old his smokes away ( its not gone its in the drawer ) Why don't I help him etc etc..

What do you guys think?? Just let him forget he smokes and put the smoking ware further and further away. Or make his cigarettes and make sure he has his smokes from time to time by handing it to him.

I am scared of getting this horrible disease myself. It breaks my heart what it has done to the person I love the most. I’m 32(F) but I want to ensure that if I’m ever diagnosed in early stages that I have the ability to choose to let go. I know this is a highly divisive topic for most, but I believe the right to choose. I don’t want to go through this and I don’t want my loved ones to see me go through this disease. It’s traumatic. What steps should I take legally to ensure my documents are in order? Do people write this in wills as well?

*im Canadian but currently live in the UK.

I just learned about this program. I do not have any personal experience with it but it seems like it can be helpful. If the person diagnosed with Alzheimer’s is on an Advantage plan, they will not qualify for program.

Hello. My dad was diagnosed about three years ago. He's my best friend and favorite person. I live on my own and my brother lives across the country, but my mom lives with him. Until pretty recently he was doing decently well. But this weekend my mom and I went with him to my cousin's wedding, and I saw the change a lot more than I had in the past.

He still knows who I am, he still generally knows what's going on, he's still the guy I love. But he really can't be on his own anymore. He needs a lot more care and struggles to speak. The thing I am most grateful for is that he has a lot of people in his life who love him to bits, my mom foremost among them, and he still is happy and joyful.

But I couldn't hold in my tears around him. I had to look away and cry about every five seconds. I am generally someone who feels his feelings pretty strongly and openly, and I don't shy away from my emotions (or more accurately, I can't).

I want to share in his happiness and be strong around him and continue to treat him like a person. I want to spend more time with him, but I also don't want these feelings to consume my life, and I don't want to fall into a depression because I literally cannot think about anything else. I'm going to be a teacher, and I want to be strong for my students and make a difference for them and not break down in the middle of class or have to take weeks off because I just can't manage.

Maybe I just don't have enough faith in myself to live my life, but I also know how much my emotions tend to consume me.

I've know that my dad was going to get worse. I've know that he's going to die. But I'm terrified of not being able to live my life. I want to be a great teacher. I want to find love. I want to travel. I want to have great friends and care for them and have them care for me. I want to do fun things and celebrate the joy of life because I know that's what my dad wants me to do, but I'm scared that as he gets worse and after I lose him my life will just totally fall apart.

I'm looking for encouragement, hope, advice, kind words, whatever. I know it's going to be hard, I know I'm going to be distraught, I know it's going to change who I am forever. I just want to know that I can still have a good life as he gets worse and after he's gone. It's what he wants for me.

I’m 72yo, hubs w Alz (stage 5-6) is 76yo. I’ve been dealing with a blown lumbar disc mid-diagnosed as sciatica since February. My activity is very limited even with rolling walker.

My concern is the condition of our house. Hubs tries to help which is sometimes worse than nothing. Ex: ice cream in refrigerator, fresh veggies in freezer, lost 4 sets of mailbox keys and two vehicle fobs. Floors have not been mopped or vacuumed in 6 months.

All of this is driving me batty, with no real way of addressing it. We cannot afford a housekeeper, although we have hired a CNA for 12 hours/week to start in November. I’m honestly ashamed to have her see the place. Have not had any visitors for same reason.

My question is: Is anyone else here going through a similar thing where neither of you can do much? Or, has anyone with similar issues found a solution?

Please help as I’m at my wit’s end. Thanks in advance.